Developmental Disabilities Notes- CL - Google Docs PDF

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Prof. Rick Lutz...

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DEFINITIONS IMPAIRMENT: Any loss or abnormality of psychological, physiological, or anatomical structure or function. (World Health Organization, 1980) Disturbance of, or interference with the normal structure and functioning of the body. This includes mental functioning. Can be permanent or transitory. Examples defects or abnormalities, loss of limb, organ, tissue, structure, functional system F loss of leg, brain injury, nerve damage, etc. DISABILITY: Any restriction or lack of ability to perform an activity in the manner or within the range considered normal for a human being. (World Health Organization, 1980) Result of impairment à Reduced functional ability à Reduction of activity Example of loss of leg (impairment) à difficulty walking normally HANDICAP: A disadvantage for a given individual, resulting from an impairment or disability, that limits or prevents the fulfilment of a role that is normal, depending on age, sex, social and cultural factors for that individual. (World Health Organization, 1980) Refers to Social and environmental consequences to the person due to impairment or disability. Not a characteristic of the person, rather it is SOCIALLY DEFINED. EXPECTATIONS WITHOUT THE MEANS TO ACHIEVE, the person is expected to function or adapt unrealistically. Example Loss of leg à can’t walk and must use a wheel chair à NO ACCESS Handicapism - a phenomenon that encompasses stereotypes and myths, negative attitudes, and inappropriate behaviors directed toward people with disabilities. Examples: New ‘Health Check’ toolkit can improve primary healthcare for people with developmental disabilities http://www.camh.ca/en/hospital/about_camh/newsroom/news_releases_media_advisories_and_backgrounders/current_year/Pages /new-health-check-toolkit.aspx http://aaidd.org/education/education-archive/2017/01/16/default-calendar/understanding-dual-diagnosis-intellectual-disability-and-m ental-health#.WHfQfVMrLIU

1. Definition of Intellectual Disability DEFINITIONS: http://www.aamr.org (INTRODUCED IN 2009-2010) lcnelson227.wikispaces.com/file/view/Intellectual+Disabilities.pp Intellectual disability is a disability characterized by significant limitations both in intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills. This disability originates before the age of 18. Intellectual functioning—also called intelligence—refers to general mental capacity, such as learning, reasoning, problem solving, and so on. One criterion to measure intellectual functioning is an IQ test. Generally, an IQ test score of around 70 or as high as 75 indicates a limitation in intellectual functioning. Standardized tests can also determine limitations in adaptive behavior, which comprises three skill types: ● Conceptual skills—language and literacy; money, time, and number concepts; and self-direction.

Social skills—interpersonal skills, social responsibility, self-esteem, gullibility, naïveté (i.e., wariness), social problem solving, and the ability to follow rules/obey laws and to avoid being victimized. ● Practical skills—activities of daily living (personal care), occupational skills, healthcare, travel/transportation, schedules/routines, safety, use of money, use of the telephone. On the basis of such many-sided evaluations, professionals can determine whether an individual has an intellectual disability and can tailor a support plan for each individual. But in defining and assessing intellectual disability, the American Association on Intellectual and Developmental Disabilities (AAIDD) stresses that professionals must take additional factors into account, such as the community environment typical of the individual’s peers and culture. Professionals should also consider linguistic diversity and cultural differences in the way people communicate, move, and behave. Finally, assessments must also assume that limitations in individuals often coexist with strengths, and that a person’s level of life functioning will improve if appropriate personalized supports are provided over a sustained period. Atlas: global resources for persons with intellectual disabilities: 2007. http://www.who.int/mental_health/evidence/atlas_id_2007.pdf Impacts a heterogeneous population, has a wide range of severity and shows at differing times (pre/post entering school / severity / adaptiveness /and environment ●

Facts and Stats Did you know...? •Autism Spectrum Disorder now affects 1 in 68 children (2016) •Autism prevalence figures are growing •Boys are four times more likely than girls to have autism ● An estimated 1 out of 42 boys and 1 in 189 girls are diagnosed with autism in the United States. •There is no medical detection or cure for autism http://www.autismspeaks.ca/about-autism/facts-and-stats

2. DEVELOPMENTAL DISABILITY Refers to a severe chronic disability of a person that is: (a) Attributable to a mental or physical impairment or combination of mental and physical impairments (b) Manifested prior to age 22 years. c) Likely to continue indefinitely. (d) Results in substantial functional limitations in three or more areas:

(e)

i) Self-care ii) Receptive and expressive language iii) Learning Mobility iv) Self-direction v) Capacity for independent living vi) Economic self sufficiency Reflects need for a combination of special care professionals.

U.S.A. Definitions shift slightly from agency to agency. Many states base their definition on the Federal Individuals with Disabilities Education Act (IDEA), identifying eligibility criteria for public assistance. In these cases, "developmental disability" refers to a severe and chronic disability that meets the following conditions: ● It must be attributable to mental retardation, cerebral palsy, epilepsy, head injury, autism, a learning disability related to brain dysfunction; or to another mental and /or physical impairment manifested before the person attains age 22. ● The impairment must also reflect the person's need for a combination of special care, habitation, or other services which may be of life-long or extended duration, and which are individually planned and coordinated. http://www.nlm.nih.gov/medlineplus/healthtopics_a.html

Other syndromes often included à Angelman, Asperger’s, Epilepsy; Fragile X, Klinefelter, Prader-Willi, Rett, Tourette, Williams. http://nncf.unl.edu/other/common/disabilities/disabilities.php http://www.firstsigns.org/delays_disorders/other_disorders. http://www.autism.org/

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Causal Factors ORGANIC/GENETIC These are related to inherited traits, chromosomal or gene related acquired at conception. These have a known cause Examples include: Down, Fragile X, Prader-Willi Syndromes, PKU, Tay - Sachs disease, Spina Bifida, etc. Phenylketonuria (PKU) http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002150/ www.ncbi.nlm.nih.gov Phenylketonuria (PKU) is a rare condition in which a baby is born without the ability to properly break down an amino acid called phenylalanine. Causes - Symptoms - Tests - Treatment - Prognosis - Complications - Prevention ENVIRONMENTAL/PSYCHOSOCIAL

These are the social, environmental, and economic factors related to the person. They are less precise than the organic conditions. 80- 85% of I.D and D.D.’s are environmental. These include: infection during pregnancy, lack of oxygen at birth, encephalitis, meningitis, lead poisoning, alcohol (FASD), drugs, or poor parenting (child abuse, Shaken Baby Syndrome, etc.) http://www.cdc.gov/ncbddd/dd/default.htm http://www.cdc.gov/ncbddd/autism/facts.html

Etiology A number of factors are associated with increased risk of intellectual disability. Prenatal causes are genetic and congenital malformations and exposure to toxins. Perinatal factors are those related to infections and delivery-related causes. Postnatal causes are those associated with childhood infections, and physical and psychological growth of the child. However, most cases are of unknown etiology (30-50%). Preliminary analyses (PK Maulik, unpublished data) show that “Down’s Syndrome” is the most common known cause and accounts for about 5-20% of all cases. The rates vary according to the study population. Congenital hypothyroidism accounts for 1-2% of cases. Other common causes are low birth weight and prematurity, birth injuries and birth asphyxia, and childhood infections affecting the neurological system (PK Maulik, unpublished data). http://cirrie.buffalo.edu/encyclopedia/article.php?id=144&language=en/ http://www.cdc.gov/ncbddd/birthdefects/downsyndrome/data.html

MAGNITUDE Intellectual Disability Intellectual D.A (M.R) The estimated incidence of Down syndrome is approximately one in 700 births in Canada. http://www.cdc.gov/ncbddd/birthdefects/downsyndrome/data.html (.2 % - 1%) About 2% of the Canadian population has an intellectual disability. – http://www.cacl.ca/about-us/definitions-terminology Percentage of the population of people with Intellectual Disability Mild 60% Moderate 32% Severe/profound 8% Down Syndrome: Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition. The occurrence of Down syndrome is universal across racial and gender lines, and it is present in approximately one in 800 births in Canada. The sole characteristic shared by all persons with Down syndrome is the presence of extra genetic material associated with the 21st chromosome.

http://www.cdss.ca Frequency of Down Syndrome: Per Maternal Age

http://www.ds-health.com/risk.htm

Developmental Disabilities The prevalence of any DD in 1997–2008 was 13.87% · Prevalence of learning disabilities was 7.66%; · Prevalence of attention deficit hyperactivity disorder (ADHD) was 6.69%; · Prevalence of other developmental delay was 3.65%; · Prevalence of autism was 0.47%. Centers for Disease Control and Prevention – “Facts About Developmental Disabilities”

http://www.cdc.gov/ncbddd/developmentaldisabilities/facts.html

More prominent in people living in poverty It is important to remember that I.D. and Develop. DA’s impact all strata of society. Many factors related to the environment however will be reflected in this socio-economic group. Affordable housing may have lead pipes, UFI, asbestos insulation, or be built in former toxic waste sites (i.e. Love Canal, K-W dump, industrial sites) Poverty may also contribute to diet/ nutrition problems. COST Ministry of Community and Social Services (Ontario) - THE ESTIMATES, 2012 – 2013 Summary Developmental Services - Adults and Child $1,720,468,500 (estimated) http://www.fin.gov.on.ca/en/budget/estimates/2012-13/volume1/MCSS_718.html http://www.fin.gov.on.ca/en/budget/estimates/2011-12/volume1/MCSS.html http://www.news.ontario.ca/mcss/en/2009/03/ontario-closes-institutions-for-people-with-a-developmentaldisability.html www.dsontario.ca/Overview

Current Budget Approx. $2B http://www.fin.gov.on.ca/en/budget/estimates/2013-14/volume1/MCSS_718.html

HISTORICAL DEVELOPMENT CHECK THE TERMINOLOGY 1859 First centre in Canada "Provincial Lunatic Asylum" in a modified Orillia, Ontario hotel. 1873 -

London, Ontario - opened after Orillia centre closed due to disrepair, as the "Idiot Branch Asylum"

1876 -

Orillia, Ontario - reopened due to demand as the first hospital training school for children with developmental disability "Orillia Hospital for Idiots and Imbeciles". Population by 1950's grew to 2400.

This terminology still exists in a pejorative context. CLASS DISCUSSION Historically, there have been members of society unable to adapt fully to the demands of the larger society because of limited intelligence. As society has become more complex, these limitations have become more conspicuous. This reflects how in the agrarian era or early industrial era adaptation was likely easier to accomplish. Also one had more support and close contact with family.

Residential and Institutional programs were set up in rural areas for "healthful" reasons, fresh air, good food and space. They provided Educational and Vocational training with some measure of success, e.g. development of social and moral values. However, problems evolved: 1) some patient's failed, 2) more severely disabled stayed longer and achieved less, and 3) after training the resident's had no place to go. This led to a move away from a developmental model to a protective model of care.

1970'S RETURN TO THE COMMUNITY MAINSTREAMING -

Accepting all children into the community school system Desegregation Improved potential to learn

SOCIAL ROLE VALORIZATION “The application of empirical knowledge to the shaping of the current or potential social roles of a party (i.e., person, group, or class) -- primarily by means of enhancement of the party’s competencies & image -- so that these are, as much as possible, positively valued in the eyes of the perceivers” (Wolfensberger & Thomas, 2005 p.4). http://www.srvip.org/overview_SRV_Osburn.pdf The application of what science can tell us about the enablement, establishment, enhancement, maintenance, and/or defence of valued social roles for people. Wolfensberger, 1995 IT IS ROLE-VALORIZING to enhance the perceived value of the social roles of a person, a group, or an entire class of people, and doing so is thus called social role valorization. There are two major broad strategies for pursuing this goal for (devalued) people: (1) Enhancement of people’s social image in the eyes of others, and (2) Enhancement of their competencies, in the widest sense of the term. Image and competency form a feedback loop that can be negative or positive. That is, a person who is competency- impaired is highly at risk of suffering image -impairment; a person who is impaired in image is apt to be responded to by others in ways that delimit or reduce or even prevent the person’s competency. An Overview of Social Role Valorization Theory - Joe Osburn http://www.srvip.org/overview_SRV_Osburn.pdf

WHAT ARE THE LIMITS? (These are often ethical dilemmas) Questions DEINSTITUTIONALIZATION To move individuals from large institutions into the community, in smaller residential settings examples: move to nursing homes, group homes, foster homes, apartments, homes for special care, Supported Independent Living(SIL), etc. *Helps to improve adaptive behavior compared to those living in institutions

*What is adaptive in an institution may not be adaptive in the wider community These concepts, mainstreaming, social role valorization and deinstitutionalisation emerged from a variety of forces with the communities that included: 1. Growth of parent movements and organized associations 2. Awareness of the dehumanizing effects of institutions 3. Research on the negative attitudes toward disabled people 4. Institutional costs and overcrowding 5. Human rights http://news.ontario.ca/mcss/en/2009/03/ontario-closes-institutions-for-people-with-a-development al-disability.html - Closure of the last institutions 2008

PARENT MOVEMENT AND ORGANIZATION 1947 1958 -

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First Canadian local association formed in Kirkland Lake, Ontario First school for "Trainable Retarded Canadian Association for Retarded Children (founded) included 10 provincial associations 116 local associations (now approximately 350 local associations) 1960 International League of Societies for the Mentally Handicapped built by 15 national organizations 1987 Name change - began to use Association for Community Living 1998 Name change Niagara Falls A.C.L. to Niagara Support Services 2000 Trend to use “FAMILY SUPPORT SERVICES” 2009 Last Institutions Closed 2009 INTELLECTUAL DISABILITY REPLACES MENTAL RETARDATION Nov. 22, 1996 - OASIS Ontario Agencies Supporting Individuals with Special Needs http://oasisonline.ca/ http://oasisonline.ca/pdf/focus1996fall.pdf

OASIS is an umbrella support network formed from a coalition of agencies in Ontario providing direct service support to people with developmental disabilities.

SOCIOLOGICAL THEORY I

ANTI-OPPRESSIVE APPROACH

One key aspect of conflict theory is the powerful excluding the less powerful from participation in society. For the developmentally disabled this is supported by misconceptions of need and best

interest whereby they had been isolated in rural institutions. This was rationalized in the interest of the more powerful members of society to benefit the disabled, less powerful. Until recently in our society government funds were used to enlarge existing facilities, where even the individuals able to survive in the larger community with minimal support were locked away. Currently, the developmentally disabled are excluded from full participation - e.g. housing where communities fight to keep the individuals with disability from moving into their neighbourhoods; by blocking politically, to prevent residency. The Not In My Back Yard (N.I.M.B.Y.) forces are often powerful enough to succeed in preventing individuals with developmental disability from living nearby. Another key issue is access to valued resources, i.e. spending on programs vs funding cuts. Excluded from community, i.e. rural settings N.I.M.B.Y. F Research demonstrates housing values remain the same or increase with a group home in a neighbourhood. WHY? – Upkeep, maintenance, etc. F CLASS VALUES SOME THOUGHTS FROM THE CANADIAN ASSOCIATION FOR COMMUNITY LIVING The benefits of Community living are real and measurable. Given the opportunity, people with intellectual disabilities can be productive in communities, pay their own way, and contribute to society as a whole. Currently, 343,000 people with intellectual disabilities do not have the opportunity to work and to pay taxes; they could be doing both. The total cost to society of segregating people with intellectual disabilities has been estimated to be $4.6 billion annually in lost productivity and unnecessary social assistance payments. By accepting the contribution that people with intellectual disabilities can make, we can begin to build stronger communities. Community living not only makes good economic sense; it benefits people with intellectual disabilities in a very warm and personal way. It makes it possible for people with disabilities to live at home instead of in cold, distant and impersonal institutions, by living with their families, where they can share in the pleasures and accomplishments of everyday life. Through community living, experiences such as gaining an education in a regular Classroom, working in a real job, and living independently, once denied to people who have an intellectual disability, become possible. Community living enables people with intellectual disabilities to lead lives of achievement and dignity. Canadian Association for Community Living - http://www.cacl.ca Community Living Ontario - www.communitylivingontario.ca

People First Canada - www.peoplefirstofcanada.ca

II

DEVIANCE APPROACH

Society holds a high value on education and intelligence. People who are developmentally disabled are different or deviate from this value. Misconceptions of the late 1800's and early 1900's led to labelling, as the belief that developmental disability was solely genetic; i.e. being "feebleminded" was clearly passed from generation to generation. During these times feeblemindedness was viewed as a contributing factor in a number of social problems including: juvenile delinquency, vice, sexual immorality, vagrancy, and pauperism. From these beliefs developmental disability was understood to perpetuate suffering and crime. Societies reaction to this was one of fear referred to as the "EUGENIC SCARE"*. This lead to over 50 years of (1) institutionalization to keep the disabled shut away from society, and (2) sterilization and laws against marriage or sexual involvement. Society values intelligence and employment. The developmentally disabled are/ OR OFTEN unable to attain these values and goals, therefore they are viewed as deviant.→ It is when individuals are unable achieve these values and goals that the s...